ReggieHall
What are your experiences managing lupus when treatment advice isn't clear or you don't have the necessary resources?
What helps you get through the day?
LisaMarie42 Member
Geri Rodriguez Member
Hi @reggiehall and @lisamarie42
When I was first diagnosed I went to see multiple rheumatologists and got various second opinions. I also researched so many things online. As patients if something isnt clear, dont be afraid to ask questions and demand the proper treatmemnt. - Geri (lupus.net, team member)
Racquel H. Dozier Member
Rose Butman Member
Treatment for me got tricky when the rheumatologist discovered I also have G6 hereditary blood disease which means I cannot take any of the malaria type sulfur drugs that are normally prescribed so now we are trying an anti-rejection drug
Rose Butman Member
Racquel H. Dozier Member
Rose Butman Member
I have been on it two weeks now and having blood checked once a week
I had a good day last week where I recognized myself but it only lasted a day
Hopefully this will help with flares
Just got back from my IGG infusions at hematologist
I had been treated for auto
Immune this way for years and it also helps with lupus
I was just diagnosed with lupus a year ago
I am 70 and it forced me to retire
Racquel H. Dozier Member
Rose Butman Member